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AVM Survivors Network

Eembolization(s) scheduled for the 2oth on 7+ PAVMs at OHSU . . . looking for a few suggestions ;)

Greetings,

My name is Joshua Griffis, and I recently scheduled my embolizations. I will be going to the HHT center at the Oregon Health and Science University in Portland. I will be in Portland between the 20th and the 24th for more testing and the proceedures.

As will most of us, finances are low . . . so I am looking for an alternative to staying in a hotel. My questions for you are . . .

1- Would staying in a hostle be an option - or would I need a private room to rest (I'll have to have multipule proceedures because of the contrast and radiation . . . and in order to do it all in one trip, the doc says I'll need to rest a few days between each proceedure).

2- Is anyone from that area aware of "real" discounts for OHSU patients??? (they have a list, but rooms are still nearly $100 per night).

3- Any ideas on discounted/free flights . . . the options I've seen are not available to me.

Thank you all for your time and assistance ;)

Joshua,
I had remembered reading a post from another AVM’r on this site, I have copied and pasted her response. Her name is Sue Roth, so perhaps you can search for her and email her on the Angel Flight she mentions below, hope this works out for you:

Just wanted to let everyone know about an amazing, compassionate, charitable organization called Angel Flight. I was an Angel Flight pilot before my brain surgery in December and flew over 50 missions to help people like us get to medical treatment, a second opinion or fly a family member to be with their loved one during treatment. I was also a passenger with Angel Flight with my first husband, when he was undergoing cancer treatments. Angel Flight will match you with a pilot who volunteers their airplane and pays for the fuel so the flight is free if you have a medical and/or financial need. Please check them out and spread the word to anyone who needs help at www.angelcentral.com. Please feel free to ask me any questions you may have. There are people who truly care and want to help you in your time of need.

Blessings! Marie

Thank you for this information!

Marie Hudson said:

Joshua,
I had remembered reading a post from another AVM’r on this site, I have copied and pasted her response. Her name is Sue Roth, so perhaps you can search for her and email her on the Angel Flight she mentions below, hope this works out for you:

Just wanted to let everyone know about an amazing, compassionate, charitable organization called Angel Flight. I was an Angel Flight pilot before my brain surgery in December and flew over 50 missions to help people like us get to medical treatment, a second opinion or fly a family member to be with their loved one during treatment. I was also a passenger with Angel Flight with my first husband, when he was undergoing cancer treatments. Angel Flight will match you with a pilot who volunteers their airplane and pays for the fuel so the flight is free if you have a medical and/or financial need. Please check them out and spread the word to anyone who needs help at www.angelcentral.com. Please feel free to ask me any questions you may have. There are people who truly care and want to help you in your time of need.

Blessings! Marie

Hey Joshua,

I’m surprised that rooms are nearly $100.00. We stay at the Mariott in Denver when I go each month and they charge only $69.00. I would bet most Mariott’s have a similar discount if they are close to a hospital. Try to find one close to OHSU and just call to find out if they have something.

Marie’s info below is spot on. Angel Flights has a great network and different “chapters” for diff areas. This is also a great link http://www.aircareall.org/listings.htm which lists a TON of organizations that all offer free flights of somekind. Not all are patient transport but many are. Angel Flights is just one of many listed.

As for the embo’s- I’m not totally sure how much they will knock you out. Do you know how long you will be “under” for each treatment. Mine are pretty quick- 2ish hours, and other than being tired I am typically fine. Sometimes in some pain but nothing a little Vicodin can’t help with. Are you going to be alone??? That would be my only concern with the Hostel situation. If you are going to be alone, sleepy from the anesthesia, and in a room with other travelers…maybe I don’t trust completely but my concern would be keeping your stuff secure. If someone is traveling with you, I’d say go for it. Even if you feel rather lousy, it’s not going to be THAT much better at the hotel really…

That’s my two cents from a monthly traveling embo girl!

Thanks :wink:

I’ll take a look at your link. I haven’t tried to call any hotels yet – just say a list provided by the hospital (I’m sure I could find places much cheaper).

I won’t be under for any of the proceedures (just sedation) . . . and I will be alone.

Thanks agian!

Shalon said:

Hey Joshua,

I’m surprised that rooms are nearly $100.00. We stay at the Mariott in Denver when I go each month and they charge only $69.00. I would bet most Mariott’s have a similar discount if they are close to a hospital. Try to find one close to OHSU and just call to find out if they have something.

Marie’s info below is spot on. Angel Flights has a great network and different “chapters” for diff areas. This is also a great link http://www.aircareall.org/listings.htm which lists a TON of organizations that all offer free flights of somekind. Not all are patient transport but many are. Angel Flights is just one of many listed.

As for the embo’s- I’m not totally sure how much they will knock you out. Do you know how long you will be “under” for each treatment. Mine are pretty quick- 2ish hours, and other than being tired I am typically fine. Sometimes in some pain but nothing a little Vicodin can’t help with. Are you going to be alone??? That would be my only concern with the Hostel situation. If you are going to be alone, sleepy from the anesthesia, and in a room with other travelers…maybe I don’t trust completely but my concern would be keeping your stuff secure. If someone is traveling with you, I’d say go for it. Even if you feel rather lousy, it’s not going to be THAT much better at the hotel really…

That’s my two cents from a monthly traveling embo girl!

Hope all goes well for you!!! Please keep us posted about your well-bring and the HHT procedure.